Star Wars: A New Hope was released when I was 19 years old & I've been hooked on the series ever since. What I have found in the intervening years is that the Jedi philosophies of Star Wars have become a useful analogy for my life, particularly since my son was diagnosed with Asperger's Syndrome- hence "Life in the New Republic".

Monday, November 27, 2006

Autism sermon part 2...

Here’s part two of the autism sermon, which was entitled “Greetings from Autismland”, by the way...

How Brendan is presently affected by autism is that, like most kids with Aspergers, he is hyper-verbal, with a precocious vocabulary, but that he needs help with what’s called “pragmatic language”. This means that he needs help understanding the give-&-take of conversation. When he was younger his conversations consisted of listing things, rather than listening to others & actually discussing things. This has caused him to need alot of help figuring out how to interact socially with peers, although he has less trouble with adults, who are often charmed by his precise way of speaking. Brendan’s precocity with language has made him an amazing story-teller, & an example of this was his having a story published in an anthology of Harry Potter essays when he was 8 years old, which actually earned him royalties.

Brendan has had difficulty all along the way with fine-& gross-motor skills, which have affected his ability to write fluently & participate in activities that require a great deal of co-ordination- except for legos. Even when he had trouble visually distinguishing the pieces due to early visual/perceptual difficulties (which responded well to therapy) Brendan has always been able to lego- the definition of a true lego-maniac, I guess. When he started learning cursive writing in school a few years ago we decided to forget that & teach him to touch-type instead. About a year ago the school district gave him an alphasmart keyboard to use at school which has made doing schoolwork much easier. We are currently looking into voice-recognition software, since it’s clear that even typing is not the best interface for Brendan to express himself, & current autism research supports this observation. Gross-motor-wise, Brendan has little interest in participating in team sports, which is just fine by us (I’ve always pictured myself as a choir mom rather than a soccer mom). Keeping a child with autism physically active can be a challenge, though. Gym class at school can be difficult for Brendan, with the noise & confusing social dynamics added to his discomfort with doing physically awkward activities. At school he’s been working with the gym teacher to reduce his anxiety about participating. For a while Brendan was taking fencing lessons, but it’s been tough to find low-anxiety time for him to do it now that school has started. Luckily he was born into a sailing family, so we started him in swimming lessons when he was 2 years old, preparing him to begin sailing with us when he was 3, & more recently he started sailboat racing with his dad, which he enjoys.

Some of Brendan’s neurological differences have led to perseverative behaviours, which are behaviours that result from neurons firing without any thought or intention behind them. We were unfamiliar with this sort of thing when Brendan began hitting himself when he was 5. We couldn’t find any behavioural method that would make him stop & this is when we found our wonderful child psychologist, whom we still work with, who explained the nature of perseveration & showed us ways to neurologically retrain Brendan when he engages in self-injurious behaviours (not all of them cause him to hurt himself). The tendency of people with Aspergers to have intense interests in specific subjects is also a perseverative behaviour, & Brendan has this characteristic as well. One thing we work with him on, when sharing his interests in others, it getting him to be aware of the give-&-take of conversation, so that he can experience a shared conversation rather than monopolising it with lists of facts & information.

Another way that Brendan’s neurological differences have affected him is that, as he’s grown older, his sensitivity to input from his senses has become more intense, which has given him aversion to loud noises & certain smells. He also has some food aversions & preferences, although he can be very adventurous about food, too, enjoying certain Japanese foods very much. When exposed to sensory overload Brendan may react with extreme anxiety, which will often set-off Tourette’s tics. This limits where we can take him- we have to be careful about the restaurants & other public places that we visit. If presented with too much sensory info, Brendan may scream, moan, or melt-down rocking on the floor. As he gets larger & more aware of his own sense of dignity, we have to be careful to figure out how to help him manage these reactions- either by distraction or avoidance. One really good distraction has turned out to be learning to speak (& read & write) japanese. One of the gifts of Brendan’s neurological differences is the ability to reproduce pretty much any sound he hears (called echolalia), so I decided to find a japanese teacher for us about a year & a half ago, since Brendan & I are both really interested in Japanese culture. It’s been a really neat experience, learning to speak japanese together. Brendan has learned a lot about the social conventions in our society that don’t come to him naturally, by reflecting on japanese culture, & we’ve also found that switching to japanese in situations where Brendan is starting to experience sensory overload often allows him to switch mental gears enough to distract him & help him cope. In spite of Brendan’s difficulty adjusting to new places, we’ve decided to take a family trup to Japan next June. We’re looking forward to experiencing a completely new & different culture together, & doing a great deal of advance planning so that we can anticipate Brendan’s difficulties, so it can be an adventure of the good kind...

One of the main ways that autism has affected Brendan’s life recently is the anxiety that results from Obsessive Compulsive Disorder, which also triggers Tourette’s tics. This characteristic didn’t show up until 2 1/2 years ago, right around his 8th birthday. Until this time most of Brendan’s behavioural difficulties arose from frustration with not being able to do something he wanted to because of motor difficulties, or the frustrations any kid experiences as they grow. The OCD has caused B to experience so much anxiety that it has caused him to try to hurt himself many times, & has affected his ability to cope with day to day life, particularly at school. The OCD also causes him to do certain things, such as touch certain things in a certain order, in order to alleviate the anxiety. It was at this point that we added a child psychiatrist to the village & began trying to find medication to help reduce the anxiety so that Brendan can enjoy life. This has not been an easy process, since we have yet to find something that works well without giving him side-effects, like weight-gain, & putting him at risk for long-term health problems, such as diabetes & tardative dyskenesia. This has been one of the most heart-wrenchingly difficult parts of being an autism parent, making the decisions as to how much intervention he needs to function versus the risks, & then watching him carefully to see how well it works (or if it works at all). Since he’s also a growing child, we’re constantly keeping tabs on his emotional functioning, & changing his medicine dosages, or the medicines themselves, accordingly. Since we want to keep him on the bare minimum medication for functioning, we have to listen carefully to what he’s telling us about how he feels about himself & his life, & not just count meltdowns & decide how many are acceptable. School is very stressful for him, anxiety-wise, but Brendan needs the opportunity to be with other kids, so taking him out of school due to the stress would not be the best thing for him. We are fortunate that he’s got creative & accepting teachers at his school, the Cobblestone School, & has developed a wonderfully close relationship to his special ed. teacher, who has the sensitivity to tell when he’s becoming overwhelmed by anxiety & needs a break. She has developed strategies with him that allow him to cope & actually learn in spite of the anxiety. Brendan also has monthly sessions with his psychologist for cognitive-behavioural therapy for the OCD, & our hope is that he will continue to develop strategies for coping with the anxiety as he grows & develops so that it will someday not be as overwhelming for him.

As you may surmise from the overview I’ve given of Brendan’s autism characteristics, having a child with autism can be very absorbing & isolating- life in Autismland runs at a different speed & with different rules than life without autism. Brendan’s needs can be very immediate. I am a stay-at-home mom & Charlie works 12-hour days as a physician, so we work hard to balance the time we spend helping him cope with day to day life. Sometimes we have to depend on each other to tag-team Brendan when things get intense lest one or the other of us burns out, so that limits the times we are available for school or church meetings & other activities. Charlie & I depend on our time together in the evenings, too, after Brendan is in bed, to compare perspectives & perceptions on how he’s doing, or share funny stories about things he’s said & done. We compare notes on any patterns of behaviour that we think may need need assistance from his psychologist. We evaluate whether his meds are working properly (as he grows that can change remarkably quickly). We also need the time just to stay connected ourselves, as a couple, so that it’s not just all about Brendan. Some evenings we read out loud to each other or watch shows we’ve taped. Sometimes we just sit quietly & hold hands. I know deeply that I could not be the person & mother that I am without Charlie right beside me. He is a big part of the joy I find in Autismland. Keeping in touch with my sources of spiritual inspiration are essential as well. Singing in the choir & teaching Sunday School help a great deal. Exploration of the buddhist concepts of mindfulness letting-go of attachment have helped me live in the present & let go of ideas about how I think my family or Brendan should be, allowing me to enjoy how they are instead, an invaluable perspective to have.

At every turn we & Brendan have been accepted & continued to feel welcome in this church community. Brendan has found friends here of all ages, understanding Sunday School teachers, mentors, & peers who treat him as a person of worth & dignity no matter how difficult it may sometimes be for him to participate in class or other aspects of church life. This has been a great blessing for all three of us. There are not many places in public these days that Brendan feels comfortable. Church, school, & our sailing club are about the only places where we can go & socialise with friends, meet new people, work for social justice, do the work of the community, & still bring Brendan along for the work & the fun without worrying too much that the behaviours he sometimes exhibits will cause misunderstanding. Being actively involved in this community as a family has kept us open to the world & aware that we have a lot to give this world, & not just to our son. From playing computer games with other kids in the lounge to playing with homeless kids while dad helps make dinner for Interfaith Hospitality Network families, Brendan gets the chance to experience the wider world through our involvement at church.

Part of engagement with the world for all people or parents of young people who are differently abled is advocacy. For me, it wasn’t always an easy thing to do- it took some time before I could say to someone observing Brendan’s sometimes outre behaviour “he’s autistic”. It has gotten easier over time, though. And one of the things we’ve found very important as we have learned about Brendan’s autism & how it affects him has been to help him understand himself well enough that he can, when he wishes to, explain it to others. This requires not only knowledge, but for Brendan to feel comfortable enough with himself & his differences that he doesn’t mind talking about them. It also requires that we, his family, genuinely feel that it’s ok for him to be the way he is. And we do. This doesn’t mean that we don’t provide him with the tools to help him be the best he can be- over the years he’s benefitted greatly from occupational therapy, physical therapy, visual perceptual therapy, & speech therapy. But it has become very plain to me that Brendan’s autism is an essential part of him. He wouldn’t be the person I know & love & take great pride & joy in without it, & so I have come to value autism as part of the whole of him. My great hope is that he will continue to grow into a person who feels comfortable with himself. I think a sign that he is on this path is that he’s been able to speak to his class at school two years in a row now about his differences, explaining how the autism affects his interaction with the world & also letting everyone know what’s up with his sometimes noisy tics. His classmates have respected his openness with them & instead of mocking or mimicking his tics, pretty much ignore them & treat him just like anyone else. His self-advocacy has been very successful so far & makes me very proud. Like beauty, autism is in the eye of the beholder. But what helps determine the perceptions of people & families affected by autism is the acceptance & support they find within their communities & within themselves. To parents facing the process of diagnosis with their child, I would say that it’s really hard at first. And it’s not easy to think & process all the information you’re being presented with when you’re numb from the implications for your child & family. But remember that you are the ultimate expert on your child, so follow your heart & gut as well as your head. Try to keep your sense of humour, too- it’s been an invaluable tool for our family. When you look for information, it’s important to know that not every organisation with autism attached to it’s name is going to give you a message of encouragement, some don’t even allow autistic adults’ voices to be heard because they provide too much of a positive counterpoint to their message of hopelessness. But the hopeful messages are out there- October’s Autism Acceptance Project that was organised by autism mom, Estee Klar, in Toronto is a good example, the Autism & Advocacy Conference that occurred a few weeks ago in New York City, organised by Kristina Chew’s husband Jim Fisher, & blogs on the Autism Hub, put together by autism dad Kevin Leitch in the UK as a clearinghouse for non-cure-oriented writers are good examples. For those supporting a family coming to terms with autism, the best help is to be open-minded, to not assume that all families are searching for a cure & bombard us with the latest information, to try & meet us half-way & allow us to help as well as be helped. Listen & learn, & love. Anyone who takes the time to think can make a difference in the lives of those around them. I know this because you all have made a difference in the life of this family living in Autismland. And on this Thanksgiving weekend, this is something for which I am very thankful.

6 Comments:

When you wrote listing as B's first use of speech, can you explain? I would like to send you a video of my son and me to see if this is what you mean but I would like to send it to you privately through email. By the way, you have B's name peppered throughout and I know how you want to maintain some privacy.

Oy, I blew the anonymity thing, didn't I? There's too much to change, really, but thanks for the heads-up...

As for listing, it wasn't the only language he had, but in contexts when he was telling us about something (usually in the car, when there was interrupted time) he would list all of the attributes of that thing, "Tahu has a red sword, he's the leader toa, he has the kanoi mask of..." leaving no room for comment or conversation. This stage preceded story-telling, which is what he does these days. The story-telling is more creative, but still leaves little room for give-&-take conversation. We usually will ask him specific questions about something he's mentioned in the story, or sometimes clarify a word that didn't make sence (he makes 'em up as he goes along). B didn't do much of the scripting from books or tv that other parents have written about, although his creative play has always been a mish-mash of elements that he's experienced through books, computer games, & tv shows. The listing & story-telling seem to be stress reducers, as well as a comfortable way for B to communicate. I'm not sure what I could tell you about Alexander's listing behaviours if I saw them... I can say that we gently encouraged him toward a more give-&-take way of communicating by making him aware of the listing & role-playing the back-&-forth for & with him. Let me know if you still want to send something...

And you have a Charlie in your household too...... Amazing the timing for this, over a weekend that began with terrible, sorrowful news about the family in the Bronx: Thanks for your good words of faith, hope, love, and understanding.

'his sensitivity to input from his senses has become more intense.' Oh dear! I was sort of hoping that it might lessen with maturity not get worse. Still that's the 'spectrum' for you. Great sermon, and well timedBest wishes

About Me

This blog account is now shared by Lisa/Jedi & son Brendan, who has begun his own blog (see links). Lisa is 53, full-time mom (to afore-mentioned Brendan) & part-time fibre-artist. Brendan is 15, in the 9th grade, & is a 5th kyu aikidoka, enjoys swimming, rpg gaming (Adventure Quest etal :) & is becoming a heck of a D&D DM. We have been studying Japanese language since the summer of 2005 & both hope to become fluent japanese-speakers someday. Our family is rounded-out by Charlie (aka Dad), who is a very good sport about everything :) & loves to sail.